In Their Own Words – Special

This “In Their Own Words” is by Kimberly Cecero Brown of South Portland, Maine, who has a daughter with autism.

I feel I have always embraced people’s differences and, in fact, have been inspired and sought friendships with those who I perceive walk through life to a beat of a different drummer. I find those who think outside the box interesting and am always enthralled to listen to those who innately think different than myself. That’s why I find it curious why I am struggling, at times, to celebrate Eme’s differences. It brings me shame the days I find myself quite traumatized to imagine our lives if Eme’s autism becomes severe, if she never recovers to a point where she could be among typical peers in the classroom and at social gatherings, if she is never accepted into the world of her peers.

At this point in time, with Eme being so young, we do not yet know if her autism will be considered mild or severe. We have no idea what her or our family’s future holds. Yes, this is true for everyone. No one knows what will happen. But if you are the parent of a very young child with autism, you don’t know if you’ll be dropping your child off at a normal school or if she’ll be at a special school at six years old still trying to learn to speak, to complete a simple task children many years younger could do, if she’ll be flailing on the floor like a hooked shark on a boat deck just because she can’t do what she wants. It is terrifying. This is why it is so important that parents of children with autism stay present in each day. To discipline their emotional selves to not think of the future. To do your best, and love your most, every single day without expectations for tomorrow. It sounds like an empowering philosophy, but very difficult to master. I struggle every day to stay present.

I am a stay-at-home mom, and on the worst of days when there is no escape from the reality, I can’t help but think, “How am I going to keep this up? How am I going to deal with this autism thing for my whole life. I can’t do this. It’s killing me. My heart is being repeatedly ripped out of my chest, put back in, and ripped out again.”

Rationally, I know this stream of consciousness is a complete failure of any sort of coping mechanism. It’s not coping at all. And I wish I can snap my fingers and come out of it during those times and think positive thoughts and not think of the future. But when you’re in “it,” it’s like being stuck in the middle of a sopping bog, your wellies emerged deep into the mud up to your knee caps. You feel stuck and when you finally find the strength to lift your boot out of the muck, you have to step in more of it to get across.

So when I go on some autism sites and see this celebration of autism and how beautiful it is that our children are “different,” I feel conflicted. Now that is a philosophy I’ve held onto steadfastly the majority of my life, celebrating “differences”, so why do I digest it all with a tad of reflux? On emotionally horrible days for me, I think it’s all a bunch of hogwash, a facade developed to keep parents sane and to brainwash us to think we’re special because our kids are so special. To keep us all from running out of our houses, screaming our heads off in frustration, anger and sadness at the lot our children have been given. I almost want to sarcastically laugh that someone like me is pleading that I don’t want my kid to be celebrated as “different”, that I want my kid to be ho hum “normal” (typical).

And I suppose the shame comes in, because not am I only thinking these things, but I keep these thoughts secret. Like if I was to say them aloud, even in a room alone, it makes me a bad mother who is ungrateful for being given the beautiful gift of a child with autism.

And then a paranormal force lifts me from the muck and back to solid ground, and I feel a sudden embrace around the bottom of my legs. I look down to see two sparkling blue eyes peering up, emitting intense love and admiration for me, tiny arms hugging my knees with enthusiastic might. There is my Eme, my Golden Soul, and yes, she is special. And not special, aka autistic, but a small little being beyond extraordinary. A little girl, despite her diagnosis, who has found a way to embrace and express such pure love, without the need to use spoken language to do so. She can speak volumes with her eyes and you can sense the presence of a venerable and significant soul through her stare. A joyful child who wants to fly to the sky to convey her authentic happiness when it overcomes her. I am blessed and I am grateful. I feel honored to be her mother. I feel that no scale of autism severity can define my little girl, for she is a gift, no matter her progress, and has so much to give to this world. I celebrate our Eme and her extraordinary self. With or without autism, she is important in this world, especially my world.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

My son Alex is the most lovely warm hearted boy in the entire world (Yes I am biased). I always knew he was special. He was a placid baby who had hearing problems. Yet there was something else. Alex lived with myself, his father (now out of the picture) and his sister Amelia in France. It was obvious through his quirks and his distress that he was touched with autism. Wait a bit longer everyone said but I felt isolated. My partner was french (and too proud to admit that his som was anything but perfect) but I had no great understanding of the language for a long time and I felt isolated and alone. I wanted help for him and left for Scotland whilst 6 months pregnant with my son Tom. The story is more tense and this is of course abbreviated. I felt a lot of guilt when he was finally diagnoised age 7. My cousin has autism and I believe it runs in my family. It is not easy to live with this information. I have in some sense been one of the lucky ones. I have had lots of help from our local authority and Alex attends an autistic specific school. He is 11 and thriving. Its hard. I worry constantly about dying and who will look after him. (I am only 36). Yes I am tired, I am not rich as I have no great work prospects and no family for childcare. I am sad but I would not change my boy for anything. He was my gift from God and my limited faith makes me believe this.

You are not the only one. Reading this was like looking at a day in my life. I have felt every feeling you described and still have a hard time sorting them all out. One thing I tell myself nearly everyday is that I have to focus on taking care of my 2-year-old son NOW. I cannot focus on taking care of him at 10, 15, or even 20 years old. If I let my mind go there, I sometimes can’t make it through a day. Just focusing on the now, and worrying about how to get him the help he needs right now, makes it much easier for me. Thank you for sharing what so many of us are struggling with everyday.

u are not alone i work full time my husband is a stay at home dad when i get a day off work and my husband goes out for the day by the time he comes home im nearly bald and climbin the walls i dont no how he does every day jonny is so demandin and can say very rude and say hurtfull coments to us and anyone else who comes anywhere near him my older son spends all his time out away from jonny but u no what i wouldnt give him up for the world when i think i cant cope another minute i manage to do it god only gives u what u can cope with not a bit more hes only 6 so i have the rest of his life to find out what hes all about

Thank you for echoing the same feelings alot of us share. I feel blessed to have my child and to experiece her hugs and loving ways, but when a week of tantrums, sleepless nights, demands, and outbursts has me researching everything under the sun to understand what is going on, I’m just plain exhausted.

I do wish our child and my family experience a very ordinary existence filled with possibilities as opposed to the mundane routines and rituals autism has imposed on all of us.

To me autism is not a life sentence and there is always the belief this will be prevented and hopefully cured sooner rather than later.

I am a nutritionist and hope my comments will be of some help. I have just completed a study of more than 500 individuals with autism. I am now seeking those who would consider joining my new study that is quite simple and will last for two to four months. I am offering a free copy of my book on the recent study to all participants. The study is closing at the end of August so if interested respond by then. I would like them to visit my web site at: http://www.whostolemyfood.com and review the section “survey.” I would like them to read the book and then let me know if they would like to join my study. To get the free book, simply send me an email as provided in the survey section.
In my studies I have found one major part missing in virtually all diets. They concentrate on the various foods and their composition but totally avoid including the information on the composition of the human body. This is detailed in my book and it will provide some major surprises to most individuals, when they compare the nutritional needs to the contributions from the foods in the diets, especially those experiencing problems of autism or most other chronic disorders.
Thank you,
Harold Rongey, Ph.D.

I want to thank for writing about your daugther , I feel, think the same way about my son Lucas whos going to be 4 in Oct only that is difficult for me to express myself in writing, Thank you for sharing your feeling and fears. Thank you a millions times.

I feel like we are kindred spirits after reading your words…they felt like they were being lifted right out of my own heart, mind, soul. My beautiful daughter, Jane, is just three and was diagnosed with autism (twice) at age two-and-a-half. I don’t think anyone really can “see” when she is lost in her world of autism except me. Her eyes are glazed and she reaches out and then thrashes around as if looking for a way out of a nightmare; for a way to be the person she is on the inside on the outside. I know the sound of my heart being twisted and tortured as I soothe her as best I can until she’s found her way. I know she’s “back” when she slowly reaches for me and wraps her arms around me so tight and she won’t let go. “Hugs,” she says. My heart fills each time and it is a balm to the pain of watching her suffer.

The magnitude of a mother’s true love is something I never really “got” even though I thought I did. I was a teacher in another life and figured I “knew” what it was to love a child/children; now I’m disabled due to complications of Multiple Sclerosis and a stay-at-home mom of a beautiful, brilliant little girl who loves to paint, count, say & sing her ABC’s, and anything that has to do with Elmo. Oh, and she’s autistic too. I knew nothing back then compared to with what Jane has filled me.

It’s a real tough terrain that we are trying to navigate and plow without any clear destination, because there really is none, as you said. You have to live each day as it comes, but making each one count. I am doing everything I can to get her as much treatment, therapy, and education I can as early as I can. Slowly, but surely, we are starting to find what may be the tools we need as we carve out this unexpected path our lives have taken.

I am so proud and priveleged to be Jane’s mother. It’s hard handling this with a disabling disease. My husband is a blessing as he works and does the lion’s share of keeping up our house. He still finds time to play and bond with Jane in the midst of all that. We try to take care of each other the best we know how. And, really, that’s what any family – those with children who are typical, autistic, or dealing with some other condition – would do.

I really just wanted to comment here because I felt like you were like that ‘singer’ in the Perry Como song, “Killing Me Softly”; especially these words:

It was as if you knew me and how I feel…all that I’m proud of and all that I’m shamed even enters my mind. But we are all human and fallible. I have a quote on my refrigerator that I read several times a day that I hope I live up to. It says, “I walk, I fall, I get up again. And all the while I keep on dancing.” I will do that with Jane for all of her life in whatever way she needs me. Thank you so much for sharing your thoughts and heart. It meant a lot to me to be able to see that there is really someone out there who is in a similar place as me. I really needed that.

hi you are not alone and feel with this condition we all need so much support it,s a very lonely feeling been mom to an autistic child i have an9 yr old son called jack who had the worst year 2009 he had a breakdown at schooland could not cope we are currently waiting for a place in a special school fo him but told no places so homeschooling sooo hard for him and us no structure in our lives and his anxiieties even tho are better not now at school but his fears rule our lives BUT the thing i say to myself is IT,S NOT HIS FAULT and the love i have for him just overlaps the guilt frustration and feelings of can,t cope. to you and all mom,s dad,s carers of our special children love and strength we will get through xx

It sounds as if you have identified the life raft you need to survive in this sea of conflicting feelings and emotions. You recognize Eme’s “Golden Soul” and see it as a special way to connect. You are able to see her authentic self without the coverings and labels that the outside world places on her. Your ability to see what lies beneath your daughter’s outer layer and join her inner world is the best gift you can give yourself and her. The more you are able to enter into Eme’s world, the more she will be able to enter your world. Focusing on this wonderful “paranormal” connection and how it can transform you from the depths of your worst fears will definitely give you the energy you need to keep moving forward. You are definitely on the right path in this most difficult of journeys.